Bronchoscopic lung volume reduction clinical trial at Brompton Hospital

Hi everyone, i've been a member for some time now, but this is my first post. I have a FEV1 of 30% of predicted, and a month ago i went up to Brompton Hospital for two days of tests to see if i was suitable to have a Bronchoscopic lung volume reduction in a clinical trial. Well i passed the tests and the following day i had the op. They gave me a sedative but was awake all through the op. Not very nice but had to go through it incase the computer said yes and had it done. The surgeon said they would talk as if i was having it done even if the computer said no, but a couple of things they said made me believe the computer said yes. Anyway i was taken back to the recovery ward and then down to a ward to spend the night. The next morning i said i've had some pains in my chest so they brought the xray machine up to the ward as they thaught it might be a partial collapsed lung which one in five get, which is a symptom of maybe having it done but turned out to be an infection or pneumonia so i spent another day in the ward and started antibiotics and the following day went home. Bad trip back in the heat but got home with the help of a friend. had three days of sob and coughing but the doctors said this was normal so i rested for a week and then relised i could breath deeper, which i havn't done for a long time, i still get pains in my lungs when i breath deeply but that goes with COPD, and when breathing out to inhale my inhalers it actually came to a stop, where usually i could breath out forever. Now i'm even walking further, slowly with the aid of my stick which i think is remarkable after only four weeks. I feel a lot better and people say i look a lot better which gives me confidence. I've even come off of my nebulizer for a week now. I go back to Brompton Hospital in two months for more tests to see how i've improved and then they will tell me if i've had it done or not. If i havn't it's been all in my mind and i've made myself a lot better. Has anyone else has this done? I will post again when i know the answer. So far so good. Look after yourselves and breath easy. Andy x

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  • Hi Andy. I think there are people on here who have had this done and I am sure they will be along tomorrow to speak to you about it. I am glad you are breathing better. Welcome to the site. :)

  • Hi Andy Welcome you have come to the right page for any help and advice as Toci said there will be someone on the page who has been through the same as yourself, It sounds like your improving day by day keep it going, good luck .Matt

  • Hello Andy,

    Welcome to a pretty exclusive club. I had valves fitted to my right lung in Feb, 2012. Wow. What a difference to my life. You will now go on a voyage of discovery. You will find out that fitness is important, as is keeping a close watch for infection. But you will find that you can do more. You will also find you need far less meds than pre-op. As you get fitter, try doing with less and less, but be prepared to go back onto something you've recently dropped if you get uncomfortable.

    About the chest pains. I had that when I breathed deep. Got it worked out that now I have one skinny lung, and one that is still hyperinflated, my heart and digestive tract are now off-centre by about 40mm. A deep breath pushes things further out of line. Not dangerous, just a little uncomfortable. I find things get back in place by resting, using the dilators and pursed-lip breathing.

    Do remember that although you feel as if you are on the way to a cure, you still have the same amount of good and damaged tissue in your lungs, it's just the emphasis that has changed.

    I've written some articles about my experiences. If you want, I'll dig out the links for you, just ask. I'll look in on this page regularly for the next few days, or you can send me a private message.

    For now, breathe easy

    johnwr

  • Hello, johnwr. This is my absolute first time participating in any type of online chat, so forgive me if I seem lost. My father has extreme emphysema. He is 72, survived a heart attack at age 45 and smoked up to about 20 years ago. In these past 7 years, his ability to breathe has progressively worsened. Today he is on oxygen 24 hrs and his mobility is almost non existent, as he can barely walk ten steps without stopping to regain his breath with extreme difficulty. He just learned about this possible option with the valve placement in the lungs. He does not know if he is physically a candidate for this study yet, but he wants to know what we (my sister and I) think. I am just learning about it myself today. I understand that this procedure is new and that there isn't much experience to learn from just yet. If you do not mind, I would love to read about your experience. If you have those links for your articles, I think it would be very helpful to hear about the experience-not from the clinical notes of the study, but straight from the person who has gone through the experience. Any insight you can give me would be greatly appreciated. Thank you so much. I wish you all the best.

  • Hello LAAC,

    From what you write, it seems that your father is in a similar condition to me when I had my op. Go with your father to see your GP and get an urgent referral to see his regular consultant about this procedure. They should know about it and be able to refer your father onwards.

    I collected all the articles together and put them onto a blogsite of my own. I am going to list the relevant articles in the best order to read them:

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    bitzofme.wordpress.com/2013...

    Happy reading! I hope that you find these articles useful.

    If you need more help, ask. If you want to, you can send me a Private Message by clicking on my name then click messages on the menu that comes up.

    Breathe easy

    johnwr

  • Onwards and upwards Andy. Good luck :-) Alison

  • Hi

    Good to hear you are feeling better, keep up the good work.

    Is it not just fantastic what they can do now. Hope everything goes well and stays well and I do hope you go on and make further massive improvements to your health.

    I must thank you cause if it wasn't for people like you trials like this wouldn't take place, so give yourself a pat on the back.

    Thank you and please look after yourself.

    David 1968

  • What an uplifting post Andy. I am so pleased for you - onwards and upwards hun. thanks for sharing your experience with us.

    love cx

  • What a great post! Really interesting, thank you so much and a big BRAVO to you.

    Wishing you all the best for good health xx peeg

  • Good luck Andy

    KOTC

    Your daily tonic

  • Welcome to the site Andy. Hope this continues to work for you. Take care.

    Cheryl

  • Hi andycap. My father just learned about this trial study, but we don't know much about it. I would love to hear more about your experience. I really admire your courage and i hope you are doing well. My father does not know if he is suitable for the study yet, but his overall health is not great. He is 72 and very apprehensive about participating, but I think he just wishes he could find a way to breathe easier. This could be his chance. Any other information you would like to share on your experience would be greatly treasured. Thank you so much and the best of luck with everything.

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